Ubiquitous human DNA opens Pandora's box of ethical questions

A scientist – or a company, or the government – walks down to the local river, scoops up a cup of water, and ends up with a good chunk of your DNA. And your kids’ DNA. And your neighbor’s. The whole town’s.

How much say would you like in how that DNA is used? In whether it gets scooped up in the first place?

Those are the kinds of questions raised by a groundbreaking study led by University of Florida scientists, which demonstrated that high-quality human DNA is easily recoverable from soil, water, even air samples in nearly any place you can imagine. The revelation opens up countless potential benefits for the public good: medical advancements, putting criminals away, protecting the environment.

But the research also cracks open a Pandora’s box of thorny ethical questions about informed consent, medical privacy, and the limits of government power.

Wherever you tread

In May, a team of scientists led by David Duffy, a researcher in UF’s Whitney Laboratory for Marine Bioscience, revealed that human DNA was everywhere. Known as environmental DNA, or eDNA, these scraps of genetic information are left behind as we shed skin cells, cough out droplets, or flush our waste.

The ubiquity of this highly personal information in the environment throws a wrench in our typical understanding of how we protect our privacy. Unlike adding passwords to our phones or other security measures we take for granted, there’s nothing we can do individually to keep this kind of personal information out of public hands.

For example, in one test inside a veterinary hospital, Duffy’s team sampled the air for DNA. The veterinary staff – who agreed to the experiment – sported full protective gear, including masks. It didn’t matter. Duffy’s group handily vacuumed up their genetic information.

“Do I lose my expectation of privacy just by being in a place and breathing and shedding skin cells? That is a total game changer for the reasonable expectation of privacy,” said Lauren Solberg, director of the Program in Bioethics, Law and Medical Professionalism in the UF College of Medicine. “I now no longer have a choice about giving off information about who I am at my core.”

Even the DNA of your family members, collected without anyone’s knowledge, could potentially link you to a crime. This isn’t science fiction. In 2018, investigators identified Joseph DeAngelo as the Golden State Killer because a dozen or so distant family members had voluntarily submitted their DNA to a genetic ancestry company.

In theory, eDNA could allow detectives to repeat the process that nabbed DeAngelo for any suspect, all without anyone being aware their DNA – or their relatives’ DNA—was gathered in the first place. These eDNA methods would sidestep the consent people give to ancestry companies when submitting their DNA.

New rules

That consent is a bedrock principle of medical ethics today. Solberg says informed consent requires discussing the purpose of a procedure with a person, the risks and benefits of the procedure, and any alternatives. But eDNA upends this notion of consent. Scientists wouldn’t even know who to ask permission from until after they’d analyzed the data.

“I can imagine few things scarier than a researcher calling a person out of the blue and saying, ‘Hey, I’ve got your DNA because you were on St. Augustine beach sometime in the last couple of days and I want to talk to you about this,’” said Solberg. “How did you know I was there? What information do you want to know about me? What information do you want to store?”

Few people may wring their hands about informed consent when it helps put away a serial killer. But the same technology could identify people accused of much lesser crimes, including nonviolent offenses. Anyone targeted by the specter of state power could be at risk.

Potential for abuse

“That’s probably the part that worries us the most,” said Duffy, who explored the possibilities of human eDNA after perfecting the same techniques to study and protect sea turtles. “There’s always a flipside. This technology could be used to catch criminals, or it could be used to oppress minorities.”

The Chinese government has already been harvesting DNA from Uyghurs, a repressed religious and ethnic minority in northwestern China. Simple eDNA techniques, such as wastewater monitoring, could bring this kind of surveillance to sewer pipes to identify towns where minorities are living, endangering them. Those risks come despite the fact that the genetics of ethnicity do not provide the kind of certainty that many people imagine.

“There’s no single genetic variant that conclusively identifies any race or any ethnic population,” said Connie Mulligan, an anthropologist at UF who researches the genetics of human ancestry. But that fact wouldn’t stop an overzealous government from misinterpreting genetic information to root out populations they don’t like.

Grappling with the future

Unscrupulous governments are hard to rein in. But in the U.S., ethical standards are set by many institutions. These include academic and professional societies, university ethical boards, and, ultimately, laws and policies set by federal and state governments. Each of these institutions – especially voters and their representatives – will now have to grapple with the ease of sequencing human genetic information collected, quite literally, on the wind.

“This is why we’re calling for real ethical consideration, because it’s moving so fast,” Duffy said. “It’s a big task, but it’s not an insurmountable one.”